"How he stayed off ECMO is still a wonder to all his doctors and nurses. " - Axel's CDH Story

Like most of us, I heard about cdh for the first time when I went in for an ultrasound. It was supposed to be a happy day. We were finding out the gender.  My husband had to work, so I went by myself. It was hard to hear the news and even harder to have to call my husband and through sobs tell him our baby might not make it. He left work and rushed home to me. I was a hot blubbering mess and not able to function. The first few days I fell into a depression. I remember taking a shower at 2 in the morning so the water would drowned the sound of me crying. Then I realized I couldn't live this way. I still had 2 other children that still needed me.

We were referred to Children’s Mercy and started all the in depth testing. With each appointment we got worse new. He had a bad heart, fluid on his brain, chromosome duplication, they weren't even sure if he had pulmonary veins.  Then I developed diabetes, his liver migrated up, and my amniotic fluids were low.

Instead of planning a nursery, I was planning a funeral. We prepared our older children that their little brother probably wasn't going to make it.  I pushed through and did everything in my power to make sure I wasn't doing anything to affect him. I watched my sugars, took my insulin, and beat myself up even if it was a hair high. I was scheduled to be induced  on July 2. June 19th I noticed he wasn't moving and went in. They sent me home since I had an appointment the following morning. At my appointment he failed his ultrasound, I was preclamptic and my sugars were scary low. I was immediately taking to labor and delivery and induced.


During labor he kept dropping his heart rate and not cooperating. I was placed on oxygen and moved into weird positions. I honestly thought they were going to wheel me down the hallway with me on my hands and knees with my butt in the air. In the early hours on June 21st I was taken for a csection, but was already crowning and delivered him naturally.

That is when his real struggle began. Axel was born and intubated.  They put him on nitric for 2 weeks before they performed his surgery. They waited because he was stuck in a plateau. He wasn't getting better, but he wasn't getting worse. How he stayed off ECMO is still a wonder to all his doctors and nurses. 

On July 5th they went in and everything was up. Liver, stomach colon, intestines, I'm not even sure what else. Due to the size of his hole they had to used a patch. Everything was going well and Axel was extubated. Shortly after he crashed and was intubated again. They did an X-ray to make sure his tube was placed correctly and discovered he had reherniated. Only 2 weeks after his 1st surgery. The surgeons said they wanted to wait as long as possible before taking him back.

4 days later on July 27th they had no choice but to do surgery again. His intestines had become twisted and were dying. They had to reopen him and remove a foot of bowel. Fast forward to September the doctor weren't able to wean his oxygen and scheduled a CT scan to find out why. They weren't able to wean him because he had reherniated and had bowel in his chest, again. The surgeons didn't wait around this time and instantly started to prepare him for surgery.  September 8th they were able to go in laparoscopically without any complications. 2 days after his surgery on September 10th Axel tried to code and needed to be bagged. His little body was going into failure. After the longest week ever, he finally began to improve. 

On November 12th after 145 days and 3 surgeries, he was released on oxygen and a feeding tube.  He is now 8 months old and I'm talking about what to plan for his 1st birthday.  I hope you find hope and comfort in his story. He still has challenges, but we are bravely fighting them one day at a time. And always remember slow and steady wins the race.